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Mult Scler Relat Disord. 2015 May;4(3):241-9. doi: 10.1016/j.msard.2015.03.003. Epub 2015 Mar 26.

Risk tolerance to MS therapies: Survey results from the NARCOMS registry.

Author information

1
Mellen Center for Multiple Sclerosis, Neurological Institute, Cleveland Clinic, Cleveland, OH, USA. Electronic address: foxr@ccf.org.
2
Department of Biostatistics, University of Alabama at Birmingham, Birmingham, AL, USA.
3
Department of Quantitative Health Sciences, Cleveland Clinic, Cleveland, OH, USA.
4
Center for Health Care and Research Policy, Case Western Reserve University at MetroHealth Medical Center, Cleveland, OH, USA.
5
Mellen Center for Multiple Sclerosis, Neurological Institute, Cleveland Clinic, Cleveland, OH, USA.
6
Barrows Neurological Institute, Phoenix, AZ, USA.

Abstract

BACKGROUND:

There is little information about risk acceptance of multiple sclerosis (MS) patients to various MS therapies.

OBJECTIVE:

To determine MS patients׳ tolerance to risky therapies and identify associated characteristics.

METHODS:

MS patients from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry׳s online cohort were invited to complete questionnaires on decision making and risk tolerance (RT) to two therapeutic scenarios: a theoretical cure for MS [CureMS], with permanent reversal of all MS symptoms but a risk of immediate painless death; and natalizumab [NAT], a real-life scenario with benefits and risks as defined by Phase III trial results.

RESULTS:

The median RT for both scenarios was 1:10,000; 15-23% of respondents were not willing to take any risk for their MS therapy. Participants with greater disability or not taking any MS therapy showed a greater RT, while females and those caring for dependents had a lower RT. Females and older age were predictors of lower RT, while increasing disability and greater blunting attitude with respect to information seeking behavior were predictors of higher RT.

CONCLUSION:

MS patients displayed a wide range of RT for MS therapies. Our study identified gender, age, disability and information seeking behavior to be associated with RT.

KEYWORDS:

Decision making; Disease modifying therapy; Information seeking behavior; Multiple sclerosis; NARCOMS registry; Risk tolerance

PMID:
26008941
DOI:
10.1016/j.msard.2015.03.003
[Indexed for MEDLINE]

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